NETNOGRAPHY AS A QUALITATIVE RESEARCH APPROACH TO SUPPORT PATIENT-REPORTED OUTCOME AND PATIENT PREFERENCE RESEARCH IN HEOR
Author(s)
Matthew Breckons, PhD1, Alex Ellicott, MSc2, Yemi Oluboyede, MSc, PhD3;
1Inizio Ignite, Putnam, Newcastle-upon-Tyne, United Kingdom, 2Inizio Ignite, Putnam, London, United Kingdom, 3Inizio Ignite, Putnam, Partner, Head of Patient Reported Outcomes & Patient Preference Studies, HEOR, Newcastle Upon Tyne, United Kingdom
1Inizio Ignite, Putnam, Newcastle-upon-Tyne, United Kingdom, 2Inizio Ignite, Putnam, London, United Kingdom, 3Inizio Ignite, Putnam, Partner, Head of Patient Reported Outcomes & Patient Preference Studies, HEOR, Newcastle Upon Tyne, United Kingdom
OBJECTIVES: This study aimed to propose a conceptual framework describing the potential of netnography as a qualitative approach to support patient-reported outcome (PRO) and patient preference studies (PPS) within health economics and outcomes research (HEOR).
METHODS: A conceptual synthesis was undertaken drawing on established qualitative research principles, published guidance for PRO and PPS, and relevant netnography literature. Key methodological, ethical, and practical considerations relevant to PRO and PPS were integrated into a conceptual framework to inform study design. An oncology topic was used as an illustrative example to demonstrate application of the framework.
RESULTS: The proposed framework outlines key domains relevant to the application of netnography to support PRO and PPS, including research purpose, researcher engagement, online data characteristics, ethical and governance considerations, and anticipated contributions to PRO and PPS. The framework distinguishes between observational and participatory netnographic approaches and highlights decision points for their use. Ethical considerations relating to public versus private data, consent, and anonymisation were identified as central to methodological decision making. The framework includes an early feasibility assessment of online data availability and richness, recognising that opportunities vary across diseases, populations, and contexts, and that geographically specific or detailed demographic information may be limited for some research questions. Lung cancer was used as an illustrative example.
CONCLUSIONS: Netnography may represent a complementary qualitative approach to support patient-reported outcome and patient preference research within health economics and outcomes research when applied within a clear conceptual and ethical framework. Such an approach may help provide early, contextual insight into patient and caregiver experiences, including treatment burden, side effects, impacts on daily life, and unmet needs, informing concept development, item generation, and attribute identification for PRO instruments and PPS. By articulating key considerations for its use, the proposed framework may support more informed application of netnography in PRO and patient preference research.
METHODS: A conceptual synthesis was undertaken drawing on established qualitative research principles, published guidance for PRO and PPS, and relevant netnography literature. Key methodological, ethical, and practical considerations relevant to PRO and PPS were integrated into a conceptual framework to inform study design. An oncology topic was used as an illustrative example to demonstrate application of the framework.
RESULTS: The proposed framework outlines key domains relevant to the application of netnography to support PRO and PPS, including research purpose, researcher engagement, online data characteristics, ethical and governance considerations, and anticipated contributions to PRO and PPS. The framework distinguishes between observational and participatory netnographic approaches and highlights decision points for their use. Ethical considerations relating to public versus private data, consent, and anonymisation were identified as central to methodological decision making. The framework includes an early feasibility assessment of online data availability and richness, recognising that opportunities vary across diseases, populations, and contexts, and that geographically specific or detailed demographic information may be limited for some research questions. Lung cancer was used as an illustrative example.
CONCLUSIONS: Netnography may represent a complementary qualitative approach to support patient-reported outcome and patient preference research within health economics and outcomes research when applied within a clear conceptual and ethical framework. Such an approach may help provide early, contextual insight into patient and caregiver experiences, including treatment burden, side effects, impacts on daily life, and unmet needs, informing concept development, item generation, and attribute identification for PRO instruments and PPS. By articulating key considerations for its use, the proposed framework may support more informed application of netnography in PRO and patient preference research.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR20
Topic
Patient-Centered Research
Topic Subcategory
Patient Behavior and Incentives, Patient Engagement, Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Oncology